New Faces on the Project HealthDesign NAC

Posted June 30, 2009 by Steve Downs

This summer is an exciting time for Project HealthDesign. We had a tremendous response to the call for proposals for the second round of project funding. We received brief proposals from 145 teams across the U.S. and are enthused by the high level of interest. Clearly the idea of exploring the potential of integrating data from observations of daily living into conventional health care processes intrigues researchers, providers, designers and technicians across the country.

Over the next few weeks, we will be evaluating the submissions and inviting up to 25 teams to prepare full proposals. We expect to announce the final list of grantees by December. The teams will then get to work on collecting and integrating observations – about meals, sleep, exercise levels, pain episodes and even moods – into the clinical care process.

We have an excellent national advisory committee (NAC) to work with us on the review process and think through the ongoing strategy. We have added some new NAC members, who we greatly look forward to working with. The 13 members of the committee read like a who’s who of health information technology and bring a range of perspectives. The six new members are:

• Veenu Aulakh, M.P.H., is the senior program officer for the Better Chronic Disease Care program at the California HealthCare Foundation (CHCF). Veenu was not a member of the NAC the last go-around, but CHCF provided valuable support for the first phase of the project and Veenu was instrumental in providing guidance.

• Susannah Fox is associate director for Digital Strategy at the Pew Internet & American Life Project, where she leads the Project's health research and oversees its digital strategy. Susannah’s role on the NAC differs from others in that she will be advising the program on overall strategy but will not review proposals or make award recommendations.

• John Halamka, M.D., M.S., wears multiple hats as a physician, a CIO and a health care IT innovator. He is chief information officer at the Harvard Medical School and Beth Israel Deaconess Medical Center and is also chair of the U.S. Healthcare Information Technology Standards Panel and chairman of the New England Health Electronic Data Interchange Network.

• J. Daniell Hebert is CEO and co-founder of the MOTO Development Group which is a product research and development company focusing on innovation and product development that blends electronics, software, and mechanical engineering. Prior to founding MOTO, he was a researcher in MIT's Artificial Intelligence Laboratory and later joined Apple Computer as a researcher of advanced manufacturing systems.

• Carlos Roberto Jaén, M.D., Ph.D., is a practicing family physician and professor and chairman of the Department of Family and Community Medicine at the University of Texas Health Science Center at San Antonio. He is also co-director of the AAFP-funded Center for Research in Family Medicine and Primary Care and is the PI of the National Demonstration Project evaluation of TransforMED.

• Deven McGraw, J.D., M.P.H., L.L.M., is active in efforts to advance the adoption and implementation of health information technology and electronic health information exchange to improve health care.  Currently, Deven is director of the Health Privacy Project at the Center for Democracy & Technology which is focused on developing and promoting workable privacy and security protections for electronic personal health information.

They join seven committee members who guided us in the first round of the project and are re-upping their commitment to the NAC for this next endeavor.

• David K. Ahern, Ph.D.
  Director, Health Information Technology Resource Center
  Aligning Forces for Quality, Robert Wood Johnson Foundation
  Brigham and Women's Hospital

• Carmella A. Bocchino, R.N., M.B.A.
  Executive Vice President, Clinical Affairs & Strategic Planning
  America’s Health Insurance Plans

• Michael Christopher Gibbons, M.D., M.P.H.
  Associate Director, Johns Hopkins Urban Health Institute
  Assistant Professor, Johns Hopkins’ Schools of Medicine and Public Health >

• Brandon Hull, M.B.A.
  Partner and Co-Founder
  Cardinal Partners

• John Maeda, Ph.D., M.B.A.
  President
  Rhode Island School of Design

• Omid Moghadam, M.S., M.B.A.
  Member of Staff
  The Harvard Medical School Center for Biomedical Informatics

• Paul C. Tang, M.D., M.S. (Chair)
  Internist, Vice President, and Chief Medical Information Officer
  Palo Alto Medical Foundation

We are honored to have the entire NAC on board. Together they provide us with the perfect mix of experience, expertise and innovative thinking to ensure that the program produces valuable insights – ultimately benefitting patients, providers and policy-makers.

A New Media Rallying Cry for Health Data Rights

Posted June 23, 2009 by Lygeia Ricciardi 

A Declaration of Health Data Rights posted yesterday night has gained significant attention from traditional media and the Web 2.0 world. Media coverage includes blogs by the New York Times, the LA Times and the Huffington Post, among others. 

The content of the declaration is a straightforward and concise rallying cry for better, easier access for patients to their own health data–and the freedom to use it in a variety of ways: 

"We the people:

• Have the right to our own health data
• Have the right to know the source of each health data element
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit    

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights."

The declaration was developed collaboratively by a group of 100 or so volunteers, including doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others "who share a common goal of greater health data availability.”

Endorsing organizations include numerous Health 2.0 companies, as well as Microsoft, Google, Dossia, WebMD, Partners Healthcare, the Center for Democracy & Technology, FasterCures, and TEDMED. As of this posting there are nearly 600 individual endorsements as well, many of which were made directly via Twitter.  

Part of what is interesting about the declaration, in addition to its content, is the mechanism of harnessing of social media to push for change and greater awareness. Endorsers are encouraged to follow the effort on Facebook and submit a video of themselves reading the declaration aloud on YouTube.

Disclosure: While the statements in the declaration would appear to contribute to the efforts Project HealthDesign supports, the Project has not officially endorsed the declaration, (though I have done so personally as an individual). 

Project HealthDesign: A Platform for Innovation

Posted June 17, 2009 by Patti Brennan 

Last week, I blogged about the bright and exciting future for PHRs and the health of the people who use theme evidenced in the proposals submitted on June 3 for our second round of funding. Today, I have a unique opportunity to take the next steps towards that PHR vision, not only in announcing the final report from our nine grantees and their support teams, but also by fulfilling our promise to openly share our work products.

Back in 2006 our team launched the Project HealthDesign program with an audacious goal–stimulate innovation in personal health records by embracing a design process grounded in two principles:  make the patient the center of the design process; and, separate the data from the application. To underline the seriousness of our commitment to stimulate future development, we adopted a policy of wide-spread distribution for use of the tools and technologies built under this project through open source strategies.  

Beginning today, the final report from Project HealthDesign’s first round grantees and their downloadable work products are available for your viewing and use at Round 1 Projects and Products. The files contain the vision, design and code documents created by our grantees, as well as the code and documentation for using our common platform. The vision and design files represent a high level of innovative thinking inspired from an intense user design process. Included here are videos depicting project concepts, executable code, interview guides, software development strategies and publications and poster presentations. In addition there are archives of informational documents created by the ELSI team and our communications group. 

We have also provided the Common Platform software under an open-source license for interested  parties who wish to implement it in their local environments. This Common Platform, designed to meet the requirements of our first round grantees for storing and sharing personal health data, provides a web-services data repository that manages observations, medication lists, and access-control preferences.  We are interested in learning about your experiences in testing these products, and hope you will down load them, implement them and let us know how they worked for you.

Over the next several months, I encourage our followers to take some time to explore our first round materials. There are tools for all levels of sophistications and interests–ranging from code and code documentation to visual stories demonstrating the grantee applications. The products are available to you through open source or creative commons licenses that seek only to insure these products will remain available for use by the health IT community. We encourage you to look at these products, try them out and use them, and share your experiences with us and the community at large through our BLOG.

We hope the work products from Round 1 will inspire vision as well as provide tools to help foster innovation, as we seek to create better ways of managing the health of individuals and the community-at-large.  

Patricia Flatley Brennan, RN, PhD, is the Director of Project Health Design.

“Meaningful Use” Means Including Patients

Posted June 15, 2009 by Lygeia Ricciardi 

A topic of recent and ongoing debate in Washington DC is the definition of the phrase “meaningful use” as it applies to electronic health records (EHRs). And discussion is likely to heat up tomorrow as the Department of Health and Human Services (DHHS) Health IT Policy Committee releases a draft definition of the phrase.

“Meaningful use” is important because medical practices that hope to benefit directly from the roughly $17 billion dollars in the economic stimulus package (the American Recovery and Reinvestment Act, or ARRA) designed to encourage them to adopt technology will have to use a “qualified EHR” in a “meaningful manner.” Those that do so will be eligible to receive incentive payments of $40K-$60K each via Medicare and Medicaid premiums over a five-year period.

The definition of “meaningful use,” however, was purposefully left vague in the law, though it does specify that it must include the ability to do e-prescribing, health information exchange to improve the quality of care (e.g. care coordination), and the reporting of quality and performance measurements. The rest of the details are up to DHHS.

With so much money at stake, the ultimate definition will likely shape the development of EHR products, as well as the way healthcare is practiced, for many years. So of course hundreds of parties have been formally and informally weighing in—with a predominance of healthcare providers, vendors, and others with a financial stake in EHRs and the established healthcare system. 

In April the National Committee on Vital and Health Statistics (NCVHS), which advises DHHS, held hearings on the topic. Numerous others have opined online. But patients and consumers have been, in my opinion, largely under-represented. As David Kibbe put it on the HealthCare Blog,

“It may have been an oversight, but patients and consumers have been left very much on [the health IT part of ARRA’s] sidelines. The attention and the money is squarely aimed at the health care providers - doctors, clinics, and hospitals. The Act's intention is to create "interoperable" electronic health records that, in the future, will be more accessible to them: doctors, clinics, and hospitals.” 

I think the point has merit, both generally and with respect to “meaningful use”. There have indeed been efforts to insert consumer/patient needs into the “meaningful use” debate, but it’s not clear that this input will be enough to tip the scales.

For example, in addition to six other principles, the Markle Foundation, with a wide array of signatories, included in its “Framework for ‘Meaningful Use’ and ‘Certified or Qualified’ EHR” the following: “Consumers, patients, and their families should benefit from health IT through improved access to personal health information without sacrificing their privacy.” 

That’s an excellent starting point—and one voiced far too rarely--but what does it mean in practice?

The Consumer Partnership for eHealth (CPeH), a group of consumer, labor, research and policy organizations, today issued its own more granular statement on "meaningful use" as it applies to consumers and patients. (Full disclosure: I participate in the Consumer Partnership for eHealth’s work as an individual, though not as a representative of Project HealthDesign or any other organization.)

The CPeH lays out a set of general expectations or aspirations for patient-centered healthcare, and links each with some specific ways in which these might be translated into meaningful use requirements over time. Among the desired functions or capabilities for EHRs highlighted by the CPeH are the following:

• Patients have real-time electronic access to their medical record along with linkages to tools that make the information meaningful and useful to them. 
• A care summary is generated and shared with the patient and other authorized providers and family caregivers after every visit or discharge.   
• Reminders about preventive services, medications, necessary/routine tests, and follow-up care are sent to patients via their preferred medium.Connections are made to community resources (online and offline groups, support programs, community services, social services, etc.)
• Connections are made to community resources (online and offline groups, support programs, community services, social services, etc.)  
• Data regarding cost and the clinical quality of care are electronically collected and publicly reported for consumer use.   
• Patient generated data is incorporated into the clinical context for individualized care.

That last point is essential based on Project HealthDesign’s learnings about the importance of patient generated data, which can be used both for the direct care and benefit of patients themselves, and for other purposes, such as quality measurement and research – as exemplified by PatientsLikeMe. The integration of patient generated data (including ODLs) is a key emphasis of the project’s second round of grants.

Another point that especially resonates with Project Health Design’s experience is the importance, which is cited a couple of times throughout the CPeH document, of customizing messages and communication with patients in ways that respond to their unique needs, whether related to primary language spoken, cultural background, or preference in modes of communication (visual vs. audio, frequent vs. infrequent, etc.). Project HealthDesign’s grantees in its first round put a lot of care into learning directly from patients and incorporating their needs into product designs and modes of communication.  

While some of the functions or mileposts laid out by the CPeH seem rather far-fetched considering where the health system is today, the definition of “meaningful use” can and should evolve over time. Articulating these longer-term goals on behalf of consumers will, I hope, encourage the healthcare system and EHR developers to push the envelope in a way that leads to a much more patient-centered vision (and reality) of care.

What do you think? Are there other functions or requirements that would support patients’ and consumers’ “meaningful use” of health IT? And how do you think a stronger patient emphasis can be most effectively championed in a sea of other voices? 

Signs of a Vibrant Future for PHRs!

Posted June 10, 2009 by Patti Brennan

This June third, Project HealthDesign reached another milestone with the receipt of 145 Brief Proposals for its second round. Not only did it mark the start of the new phase for the project, but it also ushered in a plethora of intriguing, exciting projects exploring how better understanding of observations in daily living  (ODLs) could improve the health and health care of individuals. During the review process we can’t reveal too much about the proposals under consideration, but here we provide you with a glimpse of what is to come.

Proposals described innovative ways to help a wide variety of patients and their family caregivers better understand, and manage, problems like  pain, diabetes, hypertension, spina bifida, hydrocephalus, rheumatoid arthritis and  intimate partner violence. Creative technical solutions were proposed to address the needs of those who are elderly, sensory-impaired or of limited health literacy. Target populations included parents of low birthweight infants, teens transitioning to college and people in vulnerable situations, such at those who had just been discharged from the hospital, recently moved away from home, or lived in an area with few or no medical facilities or providers.

The nature of the ODLs proposed ranged from familiar patient-provided information (appetites, sleep adequacy, etc) to those reflecting a high degree of understanding of patients and their health experiences.  Novel ODLs included behaviors, emotions, sensations and environmental characteristics. 

You may recall that we challenged the applicants to employ a 3-part technical architecture--with data capture in the everyday life of the individual, data storage on a third party platform like Microsoft’s HealthVault or GoogleHealth, and data interpretation and presentation back to the clinician and the patient. Along with standard data capture, teams proposed utilizing photos, environmental sensors, gait analysis, grocery store transactions and vocal recording.  Almost one-third of the projects proposed using Web 2.0 tools, including social networking tools, Twitter and SMS. Platform use was almost evenly split between Health Vault and GoogleHealth. In addition to innovations like dashboard presentations, applicants proposed using electronic messaging, graphs and charts, and standard reports as ways to present integrated views on the ODLs.

Submissions came predominantly from the Northeast, with most submissions from Massachusetts, California, and New York. More than half of the proposals came from educational institutions, sometimes because the project addressed the health needs of students and sometimes because the educational institution served as the work site of the lead proposer. The second most common organizational type was medical centers and hospitals. A smaller but critical set of proposals came from the private sector, split between for profit and non-profit companies.  This round brought in almost a dozen proposals with nurses as primary investigators, more than the first round.

With the breadth, range and ingenuity brought forward by teams who submitted brief proposals, Project HealthDesign is looking forward to the coming round and the future of capturing and utilizing ODLs in patient care. Our National Advisory Committee will spend the next several weeks evaluating these brief proposals; we’ll select up to 25 by July 20^th and invite them each to prepare a full proposal.  We will announce the final list of grantees by December 1, 2009. 

Congratulations to all 145 teams who submitted proposals–the creativity and vision of the ideas presented here portends a bright and exciting future for PHRs and the health of the people who use them!

Patricia Flatley Brennan, RN, PhD, is the Director of Project Health Design.

Warm and Fuzzy User-Centered Health Applications for Kids (Literally, and Figuratively)

Posted June 2, 2009 by Jason Rothstein and Lygeia Ricciardi 

User-centered design (UCD) is one of the key themes of Project HealthDesign’s first round of grants. What does that mean? It means designing health applications and interfaces with actual patient use—and direct patient input—in mind from the start, rather than focusing on technical functionality first and integrating patient preferences later. 

With a background in both pediatrics and bioinformatics, Project Health Design round one grantee, Dr. Kevin Johnson, from Vanderbilt University Medical Center, brought a strong user-centered orientation to My-Medi-Health, a prototype medication management system that offers a fresh approach to involving children more directly in the management of their own chronic conditions.

And we really mean a fresh approach. Most medical devices are less than warm and fuzzy, but Dr Johnson’s team actually embedded a set of functions in a teddy bear as one of their demonstration projects. Though Project HealthDesign’s second phase places less of an emphasis on UCD, we believe it continues to be an important aspect of designing successful tools. Following are some words of wisdom Dr Johnson shared with us about how to take a UCD approach to developing other health–related applications:

Understand your patient’s ‘life space.’ Even though most of a patient’s care takes place outside of a clinical setting, that care remains part of a larger system that may involve multiple caretakers and multiple locations. Using a process based on Kurt Lewin’s Force Field Analysis, Dr. Johnson’s team focused initially on home visits and school visits to really understand how these environments and the people in them influenced children’s medication compliance.

Find where systems break down, and approach solutions broadly. Dr. Johnson and his team conducted extensive focus groups to better understand the challenges kids and their caretakers faced with medication management. One of their more interesting findings was that in most cases, the pediatric patient wasn’t an active participant in his or her care. While My-Medi-Health’s design would involve children more directly in the process of medication management, making this change also required a bigger philosophical shift that had nothing to do with software design: giving children one or more doses to carry at all times, empowering them to make more choices about their lives and schedule.

Conceptualize without limitations. When it came time to make the first paper prototypes, Dr. Johnson’s team involved patients and families directly, and didn’t give them limitations by specifying imagined hardware or software. Instead, they showed pictures from The Jetsons, and pointed out that nowhere in the show do viewers ever see someone sitting down at a computer. They asked their user group to imagine that kind of seamlessness and integration with everyday life, and let their imaginations go.

Embrace early adopters. While you shouldn’t lose sight of the value of simplicity and usability, always take advantage of the enthusiasm and technological sophistication of early adopters during the innovation stage. But…

Use commonly available technology.  My-Medi-Health started with an all open-standards approach, using DHTML and PHP to build the user interface. As early focus groups led the team to a slightly more intricate user interface, they decided to add a new front end using Adobe Flash, a non-open, but widely available platform free to the end user. And…

Never forget that new technology is on the way. As you make decisions about implementing solutions, try to anticipate that new technology (and new patient preferences about how to use technology) always lurk just around the corner. Try and anticipate the need to change and adapt down the road by making wise choices that don’t marry process solutions and individual technologies together too closely.

Innovate, Demonstrate, and then Compensate. UCD relates to usability and accessibility, but remains a distinct process. Dr. Johnson understands that introducing new technology tools into patient care gets more complicated when you consider the needs of particular populations, such as the disabled, the elderly, or those who stand on the losing end of the digital divide. But factoring in these considerations too early in the process can be risky. First you innovate to try and solve the broader, more universal problems, and then you conduct effectiveness studies to demonstrate that these solutions actually have an impact on quality, safely, and outcomes. After you establish that you have an effective application, then you can conduct meaningful, high-quality work to make that application as widely available and useful as possible.

 

 

PHR Related Events in June

Posted June 1, 2009 by Lygeia Ricciardi 

June 9, 2009 - National Committee on Vital and Health Statistics Hearing on Personal Health Records

NCVHS advises the Department of Health and Human Services. This is the second of its hearings this spring on PHRs. Panels will address Federal Demonstration Projects and Consumer Advocates and Attitudes. Members of the public are invited to attend and make comments. (Hyattsville, MD) 

June 9-10, 2009 – 3rd Annual Microsoft® HealthVault™ Solutions Conference

Join several like minded individuals to discover how to build on the HealthVault platform, which could ultimately help transform healthcare. Hear directly from healthcare professionals, consumers, and Microsoft product managers to better understand the overall health landscape and product roadmap. Dr. Mehmet Oz, renowned heart surgeon at New York Presbyterian Hospital and New York Times best-selling author, will be this year’s guest Keynote Speaker. (Bellevue, WA)

June 11-12, 2009 – 5th Annual Games for Health Conference

Featuring two days of talks, more then 300 attendees and 40 sessions provided by an international array of over 50 speakers cutting across a wide range of activities in health and health care. Topics include exergaming, physical therapy, disease management, health behavior change, bio-feedback, epidemiology, training, cognitive exercise, nutrition and health education. (Boston, MA) 

June 15-17, 2009 – ILSI- Biomed Israel 2009, 8th National Life Science & Technology Week

ILSI- Biomed Israel will tackle the challenges faced by the biomedical industry in light of the current economic crisis and the always evolving market environment.  The lectures and panels at the conference will provide outlooks medical technological breakthroughs, investment strategy in a time of crisis, facing the change of regulation and legislation made in the U.S. markets, impact of new FDA regulation on development of new medical devices and cardiovascular therapies in 2020. (Tel Aviv, Israel)

June 22-23, 2009 – 6th Annual Health Care Unbound Conference

The conference is both an educational forum and a networking event, attracting hundreds of high-level executives, IT staff and clinicians from across the US and abroad. Key topics to be covered in this year’s program include: the impact of the economic stimulus package, regulatory and reimbursement issues, payer and provider perspectives, the emerging role of wireless technologies, the medical home model and its technology implications, social media, games for health, strategies for success for telehealth service providers and much more. In addition to dramatically changing traditional health care delivery, “Healthcare Unbound” attracts a range of companies that previously have not been deeply involved in healthcare – including consumer electronics, telecom and information technology companies. (Seattle, WA)

June 28 – July 1, 2009 – 10th International Congress on Nursing Informatics

The theme of the 10th NI Congress is “Nursing Informatics – Connecting Health and Humans”. The program will include keynote presentations, papers, posters, tutorials, workshops, panels, scientific demonstrations, professional site visits and commercial exhibits.

Nursing Informatics has a central role in the health care system all over the world. Over the years the role of nurse informaticians has been highly valued by other health care professionals, and it seems that the need for nursing informatics as a field of scientific expertise and practice developer is growing strongly. Individualized care with interoperable information systems is a goal for nursing practice full of technology. Increasing nursing knowledge, through structured nursing data recorded and stored in data warehouses, has huge potential for improving the information in health care governance. Nursing data can give extra value for managing and evaluating the whole health care service field. Computers and web-based teaching and learning have been used to prepare nurses for the information society. Innovative education serves possibility to transform health care services worldwide. (Helsinki, Finland)

June 29 – July 2, 2009 – The HIT Symposium 

The Health Information Technology Symposium at MIT is the leading forum on preparing for the upcoming stimulus funding and in turn successfully implementing EHR programs. The event will help leaders from every sector of health care, including those representing consumers, employers, payers, providers, and vendors, gain timely intelligence and practical insights on how to benefit from the health IT programs and provisions of the American Recovery and Reinvestment Act. Participants will hear from the policy leaders responsible for many of the programs within the federal government, as well as nationally recognized experts on topics such as privacy, financing, standards, and technical assistance.

In addition, practical insights on how to effectively access funds from grant programs, and how to support effective health IT adoption will be shared by veterans in the field. The final day of the Symposium will be devoted to the role of health IT in health care reform, which promises to be a hot topic as Congress deliberates health care reform legislation in the next two months. (Boston, MA)